Fibro. is destroying my marriage!

After a divorce in '96 I was on my own for five years. I now realize that during that time I was able to do what I needed to do to manage my illness. Then I met the "perfect man" (is there really such a thing??. He is somewhat disabled following cancer surgery nearly 9 yrs. ago, so has chronic pain, decreased strength and stamina problems. His doctor said we were a "good match!".

We married three years ago and there has been a steady decline in our relationship since six months following our marriage. My husband has mentioned that I'm "different ever since the fibromyalgia got worse." In my view, it's not worse, I just lost control of managing it! He was so understanding, acknowledging the fact that I have really limited stamina/easy fatigue, so, for example, I HATE to shop. He's not happy if we just go to the grocery store and come right home. A stop at "Home Depot" (and walk for a mile, I swear!), at yard sales, etc. Going resulted in one of us being miserable: either I was exhausted or he was unhappy.

He knows that by 1 or 2 in the afternoon, I need to crash: the day's energy is gone and down time on the couch is a must. Result: He leaves to go grocery shopping at, say, 10:00 a.m. and gets home at -- you guessed it-- around 1 or 2 p.m. (all the stops, you know). So, I drag myself off the couch -- unrested and miserable -- to put groceries away. (I can't handle the guilt if I stay put on the couch!).

Our body clocks are soooo different as far as times to get up, go to bed, when we have the most energy, etc.

Shall I go on? NO, this is already too long...the bottom line is this: With losing control of the fibromyalgia management, I've become a moody, irritable witch!

He continues to say he understands and does whatever he can...but I'm still miserable, which, of course, makes him miserable.

this situation cant go on it will wear you both down,my man is great but he is not disabled so he takes up the slack and tells me to lie down.

you and your man need to find that happy medium. of course your body clocks are different ~ nearly every one i nkow w/fm finds it easier to stay up at night and then sleep during day but of coures thats just not practical so we toss and turn all night and then struggle to get through the day.

do you pace through the wk as well as through the day?
for example i go shopping on wednesday dog training on thursday and go and pay my gas/telephone/water/electricity etc on friday and so dont spread my self too thin (thats the plan lol)

You're right, Smiffy. Pacing one's self during the week is extremely helpful and something that I was doing...prior to remarrying! As much as I've tried to communicate my need to "Plan Ahead!", my husband is very much a spur of the moment kind of guy.

I've posted the "20 Ways to Cope With Fibromyalgia" on our frig., and added stars to the five that I have found to be critical to successfully dealing with fibro. (Carefully ration every ounce of energy..rest is critical, etc.). He's read them and we've discussed them more than once. Yet, things don't change. This is all so strange, because he is one of the kindest, most loving and easy-going people I've ever met! So how come he just doesn't get it??

the key to a good marriage. And realizing that your situation is just different and that there is NO normal! Waht is normal for others is not normal for you! My hubby and I are both only 40, yet we have realized that sleeping in separate rooms is what works best for us. He needs to sleep, and so do I, its just that our schedules are different. I can't help it and neither can he. But we talk about it, we cuddle alot of night before he goes to sleep and do what other married couples do! IT works for us. You need to find out what will work for YOU!

I know what you are feeling and hear what you are saying. I feel the same way too, I have only been diagnosed for less than a year and spent most of it in denial.

I have a very supportive man, he will do anything for me. BUT...I think I have the wonderwoman syndrome, maybe you too, can't or won't let go of the things that you used to do that made you feel equally involved in your relationship.

I had my first nap..ever..last week. I felt guilty but guess what? I had one yesterday and today!!! The guilt is not there anymore! Guilt is our worst enemy, relationships are two people who will and do take care of eachother...no matter what!
I also have noticed that since my body has changed(25lbs), I am so insecure, I don't initiate intimacy, if he is just tired from his day, I take it to heart thinking he is disgusted with me.
I think our minds can really screw us up when we are in so much pain, we feel that we should be able to be our old selves and well that's just never going to happen, I'm crying at that reality right now but it is a reality. And a challange to learn how to survive this way and survive a relationship a new/different way.

Hi! Oh, you sound so frustrated...I know my heart aches for you both...
My ex didn't half way try to understand my limitations and after time, it made me so depressed I actually did even less...but always felt guilty, making the pain worse and the flares unending. He knew I was sick when we married 15 years ago, although it had no name.
We're divorced-- although not because of the FM, I know he viewed me as weak and that I was exaggerating...I left him for other reasons but he commented that he was glad to get rid of me since I was the way I was(in the courtroom to the judge). His loss, and yay for me for getting away from him.

However, on to you...sounds like your husband is sort of grieving the old you (sounds like he got better w/ his health or at least it isn't worse???)...and frustrated due to lack of how to fix you...a thing most men want to be able to do...

So my advice to you is to sit down w/ him and ask him to give you specific "complaints" (not criticisms) that he has regarding your health...and honestly listen to what he has to say. You may be surprised that he may have some insight or ideas that will help you...do your best to listen, not get defensive, and don't complain about him during this talk.

If any of his complaints are legitimate and there are ways to improve, let him know you appreciate the insight and will be willing to work with him to make it better for you both to deal with as long as you feel his total support and can be vulnerable. You sound vulnerable on this board, but are you able to express yourself with him and feel confident he will still love you?

If he wants you to run around w/ him, let him know that if possible, you'll do it, but that means sacrifices for him too (you may have energy to run around but not to clean up, be intimate, cook or put the groceries away). Ask him if that's worth the sacrifice, and if it is, do your best to work together on it and then DON'T feel guilty for setting the limitations-- it's for both of you. Also, use the electric carts in the bigger stores. My pride got in the way of that, but I got over it and use them when I absolutely know I'll never be able to walk the whole store and still make it home!!! Also, get a handicap pass if you don't have one...to make it easier to get in stores!

I know my dad LOVES to run around on the weekends and it wears mom out, but he told her no housework on weekends and they usually eat out...so it makes him happy, and that's good (she has FM too). It doesn't even BOTHER him that she's not cleaning or cooking-- because he wants the companionship more! Can you relate? It turned out it was HER own desire to clean, not his...and she can clean during the week...

If any of the complaints or issues are things you absolutely have no control over, be upfront and tell him you want as much out of life as you can get, a good one with him...but that certain limits are just that-- limitations that HE will have to either overlook, or modify HIMSELF in a way so that it will accomidate you. You'll complain less, be in a better mood and that's gotta make him happy!
Ask him to respect your limitations. The areas that can be improved (diet, taking meds on time, pacing yourself, going to bed on time, etc) you will do your best to improve-- so if that's an issue for him, take it seriously...whatever quality of life you can improve will be worth it for your sake and his.
You also should let him know YOUR concerns and fears regarding the marriage since the FM is a part of you that will unlikely go away like he (and you) would like.

I wasted too much time feeling guilty for what I couldn't change, and wasted time being stubborn knowing there were things I could do to change or improve my level of function-- I guess after awhile I gave up because i didn't feel what I did do mattered (and I did a lot, just never enough for him). So if what you do matters to your hubby, it's worth it to push yourself where you can and get as much out of life as possible, as long as you are balanced.
I think if running around makes him that happy, then maybe seeing you do that when you can will make him more appreciative of you and he will be willing to help (by say, putting the groceries away and making you get back on the couch if you get up out of guilt). Let his ego win, not your guilt in those areas.
He seems like a good guy--so don't waste your time feeling guilty-- and find a way together to manage its progression!!You have FM, but you are NOT FM! He's entitled to feel a sense of loss, but not to make you feel unloved or not good enough. In time, he'll accept it...I hope so anyway.
Take care,
cindi

I am soooo glad I found this web site! All of you have been so supportive and understanding. Your responses have been a great help and I thank you all!

To update: A long heart to heart talk (and lots of tears) got me almost nowhere last nite. I'm wondering if anyone, besides us who have it, can truly understand what it's like. In so many words he seemed to communicate that this relationship has to be all me, me, me and that his needs don't matter. Sigh...not what I was aiming for at all!

dear jodi after reading your letter it could have been me that wrote it.i really believe that other people dont understand how fibro affects a person. my husband and i are over 50 and have been married for 4 yrs.we seperated and fought a million times. he didnt understand how i felt and he wanted things to be like is was before.that is never going to happen!he is sick NOW so he doesnt expect me to be wonder woman!!i now take a nap if i want or anything else. what a blessing!!i didnt meen to write so much.sorry take care of your self and dont let your husband drag you down.good luck ,,shell

My ex. was ignorant when I had Eclampsia during pregnacy. I learned reflecting back that I should had taken care of myself and if he couldn't handle the reality of that he wasn't plugged in with me/us to begin with. You can't change someone else, but you can change yourself and your own thoughts about things. If you take care of yourself with confidence he will see it, and if he truly loves you he will value your confidence and dedication to take care of your chronic illness. If he doesn't, he got something within him self he needs to recognize and work on. If he is not willing to do that, you will have to make some bigger decitions.

I hope I don't sound critical, but we women take too much crap in relations, it's not acceptable.

Shell, my motto used to be "I think, therefore I am single." LOL I'm wondering if I should have kept thinking and stayed single. When I was on my own I was able to rest when needed, not cook when I didn't feel like it, etc., etc., without it affecting anyone else.

And Lenasvn, you're absolutely right, we do take much too much of men's crap. And I think that hard decision may be looming out there on the horizon.

Thanks, ladies. It helps to know I'm not alone and that someone understands and

jodi i sooo know what u mean. and let me just tell u its not that he's a mad beacause women can be the same way. its just the type of person he is. i send u many hugs in hopes that things will get better. appreciate the times he is there for u and everything that he does do for u and just ty your damest to work things out. i know its hard with everything else u can barely work out getting yourself dressed. just wanted to let u know that theres alot of us going thru this right along with u. more hugs. best wishes. and be blessed.